Elizabeth has OCA and Nystagmus was diagnosed with Albinism at the age of 40. Liz is passionate about empowering persons with Albinism and also creating an accurate and positive perspective of Albinism in the media. She has four adult children and lives in South Australia with her husband. In January 2020 Liz joined the Secretariat of the Global Albinism Alliance – Pilot.
Julie is enthusiastic about sharing her lived understanding of albinism with others in the AFA community and is also the ACT AFA representative.
In her professional life Julie has been an ABC Broadcaster and a primary school teacher. She is now semi retired working when it suits her. Julie lives in Canberra and is married with two adult children.
Julie says she is both legally blind and legally blonde. Julie’s attitude to her visual disability is to find a way around the problems it presents, though she hasn’t cracked driving yet. Roll on driverless cars!
Annette Van Gent
Annette has OCA and nystagmus, and was diagnosed with Albinism as a baby. Annette is committed to working towards challenging myths and stereotypes about Albinism, and promoting an accurate and positive understanding of people with Albinism. Annette enjoys meeting and supporting other people with Albinism and their families. Annette lives in Sydney.
Glen has OCA and Nystagmus and was diagnosed with Albinism as a baby. Glen has an interest in technology and how it can be used to make life easier for people with albinism. He is from Victoria and is one of our previous conference convenors.
Marie was diagnosed with OCA when she was very small and has been a member of the AFA committee for nearly ten years.
In her spare time she volunteers with VisAbility in Western Australia, as a consumer committee member. Marie lives in Perth.
Conference Convenor 2011
Ted has OCA and Nystagmus and was diagnosed with Albinism as a baby. Ted enjoys meeting and assisting new parents of children with Albinism. Ted who lives in Sydney, has been an office bearer for many years and is one of two NSW AFA representatives.
Sandra is grandmother to three children with Albinism. She is the Victorian AFA Representative and also currently the Webmaster. She is passionate about providing opportunities for the albinism community to meet, provide support, share information and most importantly to act as role models for children with albinism.
Jennifer was diagnosed with albinism as a 3-month-old. Until recently she had never met anyone else with albinism and now has found a whole new family. She is a strong advocate for equal opportunities for people with disabilities and strives to ensure that people are able to achieve their full potential in life. Jennifer lives in Darwin and is the Northern Territory AFA representative.
Jessica is mother to a beautiful little boy with albinism. She is passionate about supporting others, with a particular focus on children and youth. She hopes to be able to help young people with albinism and their families to build resilience and confidence in themselves and to educate the world around them on the capabilities and beauty of those with albinism.
Rachel is mother to a teenage daughter with albinism. She has been involved with the AFA since 2006 and is particularly passionate about supporting engagement in sport and recreational activity. Rachel has a background in education working in schools, universities and industry. She lives on the northern beaches of Sydney with her husband and two children.
Dominee has a daughter with OCA2. Dominee is passionate about families having access to correct information on their journey to understanding Albinism and empowering persons with Albinism to be the best version of themselves. Dominee currently works in the Human Services sector with experience in Child Protection and Housing.
We are seeking people to assist in the running of the AFA, if you have skills that you feel would be valuable to the fellowship or would simply love to give it a go, we want to hear from you. Contact us now!
Phone: 1300 22 16 19
President: Elizabeth Beales Email
Vice President: Julie Derrett Email
Secretary: Annette van Gent Email
Treasurer: Glen Bracegirdle Email
Assistant Secretary / General Committee: Marie Bedford
Special Projects: Sandra George
Webmaster: Sandra George Email
2021 Conference Convenor: Ted Thomas.
General Committee: Jennifer Rivett, Jessica Joyce, Rachel Perry and Dominee Hart.
Download AFA Constitution
The AFA stands for self advocacy and we are proud that 7 of our 11 elected committee members have albinism, three are parents of a child with albinism and one a grandparent of a child with albinism.